It don’t come easy

My intent was to post a few of Jessie’s paintings. As I started to write, I realized that there was more to the story that should be shared. As all stories go,….. this all started because one man saw the spark in her eye, and her life forever changed. He researched Angelman Syndrome and found no helpful data to suggest that this undertaking would be successful. This was a challenge and he was a gambling man. Little did he realize that she would become one of his toughest clients. A strategic plan was set in place beginning with building a foundation*. From this point on, the bar would be raised, Jess would be expected to listen, focus, communicate and attempt new things put in front of her. Up until now, Jess had been passed along. She had learned that if she didn’t do her work, someone would do it for her. Not only did this erode her self esteem, but she got away with it. The mistake people make is that Jess is not simple, but is a complex young lady. She learned to deceive and manipulate people with her smile and easy going personality. This had served her well. at least she thought so.

When we pulled Jess out of school and moved her into the occupational training center (OTC), we were told it would take two years to re-train her, we only had one. When I say re-train, it is more than just develop skills. Jess had to change the way she saw herself and learn that she was capable of much more than she knew. As the song goes, “it don’t come easy, you know it don’t come easy!”.

No one likes change and Jess was no exception. We needed help and a lot of it. Jess’s fine motor ability was so poor, she needed help with dressing. Because she couldn’t manage her clothes, she was not able to toilet herself independently either. Over the years, I had repeatedly asked school for support at home and they said that we were on our own, it was not their job, blah, blah, blah. The big secret schools do not want you to know is that they can provide home services. My error was not requesting this in writing. As new demands were being placed on Jess, she became physical and lashed out. It was imperative to extinguish her aggressive behavior. As her behaviors escalated, school could no longer look the other way and they finally hired Vikki, a behavioralist to work with Jess at home.

Jess & Vikki

Vikki was a little spit fire of a woman. She was small, but mighty. Jess learned boundaries because Vikki was consistent. Vikki worked closely with the OTC. We all had to be on the same page in order for Jess to find success. This included retraining us. Through a modified ABA approach (just enough to track her), Jess finally had a program that would get her off the path that was leading her nowhere.

Jess could not transition to any program if she had aggressive behaviors. As if all of this isn’t bad enough, when your child turns 21, what was considered “acting out” in school, now is considered assault. The “system” doesn’t care if they have special needs. Jess is not emotionally disturbed, however, if she showed any aggression, she could have been placed with a population where she did not belong. Another tidbit schools don’t tell you is that your child can’t transition to “any” program unless they can toilet themselves. Looking back, it is hard to believe that we had been headed down such a dark path. We thank God for placing the exact right people in our lives in our time of need. In football terms, this was our Hail Mary.

It is my belief that Jess’s behaviors escalated because she was frustrated. She was frustrated with all the demands that were being put on her. She was frustrated because she had no way of telling anyone how she felt. It is very isolating not be able to communicate. Jess was desperately holding on to the only control that she felt she had. At one point, as Jess was being bombarded from all sides, there was one moment when Jess spoke out and yelled “enough”!

Elephants, family of three

As Vikki helped Jess work through her issues, one way she tried to connect with her was through art. Heidi, her SLP, helped Jess find her voice using an app called Speak for Yourself (SFY, see post, Going Rogue: Finding Speak for Yourself) and the OTC tied everything together. Due to this group effort, Jess managed to make it through the year. The day of her graduation, Jess had her last formal speech session. She told Heidi through SFY “Dad, Father’s Day, paint, hide”.

Yellow Guitar, June, 2013

The following Saturday, Vikki came to the house for her last session. I had left before she arrived. When Jess completed her work, Vikki asked her if she wanted to paint and Jess wouldn’t get her supplies out. Vikki texted me explaining the situation. It was then that I remembered the last words Jess had said to Heidi. Immediately, I texted husband telling him to leave. As soon as he left, Jess immediately went for the art supplies. Vikki said she took at least ten minutes searching on SFY looking for the word that would tell Vikki what her subject would be. Finally, Jess got up, walked across the room and pointed to the wall of guitars. Now they could begin! Jess was specific as to the colors she wanted to use and where to put the fret markers. When she was done painting, Jess then hid her masterpiece.

The next day was Father’s Day. When we returned from church, Jess immediately took her painting out of hiding and presented it to her father. When company comes, she often makes a point of showing them the art that she made for her dad. She is so proud of herself! To us, the painting represents how far she has come, as well as, how far she can go. It’s so important to be able to make your own choices.

*nothing was asked of Jess that she was not perfectly capable of doing. She needed someone to review the basics and fill in the gaps that were there…and there were many